As i have mentioned before (see CBT (2) and CBTupdate) i get an HPI payment through my employer’s insurance scheme, and they forcefully “encouraged” me to go to CBT.

Recently i went to see my NHS specialist and the insurance company wrote to him for a copy of his report (they like to see everything related to my health). He has written them a great letter and i thought i would share my joy by copying the important parts below:

Her condition has deteriorated significantly…her physical activity is reduced to 5-10 minutes without needing to rest… She is dependant for her ADLs (Activities of Daily Living) on assistance from her partner. Her memory and concentration is poor. She needs to sleep during the day.

She is not fit for work of any kind at present and is unlikely to be fit for work in the next six months, as a minimum.

Since she last had involvement with our team her condition has deteriorated. This is in part because you company required her to attend CBT with a therapist who has no knowledge of the management of CFS/ME – this has contributed substantially to her decline and was an entirely inappropriate intervention which should have been discussed with me first, as her treating clinician.

Her depression is secondary to her underlying physical condition. There are no secondary psychological conditions preventing her recovery.

I would note that from the tone of your letter and from the approach you have taken to my patient that you view her illness as entirely a psychological one. This is entirely unacceptable and demonstrates an inadequate knowledge of the current theories of the aetiology of chronic fatigue syndrome. CFS(ME) is classified as a neurological disease under ICD-10 and as a physical disabling condition in the NICE guidelines of 2007. Current research has shown that there is a genetic susceptibility to develop the illness, which in about 50% of cases can be triggered by infection, as in (my) case. We believe that infection leads to a dysregulation of the immune system, probably involving the IL-6 – IL6R system, which in turn leads to generalised autonomic dysfunction, the degree of which can be correlated directly to the level of fatigue. The muscle pain in CFS(ME) has been shown to be due to lactic acid accumulation in the muscles secondary to abnormal muscle blood flow. Functional brain imaging and neuroendocrine testing has shown that depression and CFS(ME) are completely distinct. I trust that henceforth you will treat her condition from the appropriate medical perspective.

It is so good to have this statement of support from the specialist. Hopefully it will keep the insurance company off my back for some time, although since i told them how i was not well enough to go to CBT any more they have not contacted me much at all, just sending the annual review documents/forms to fill in. After ringing me every two weeks over a long period before i went to CBT to check how i “felt” about it, and me forcing myself to go twice, despite how totally draining it was to answer an hour of personal questions, and not wanting to go at all, there seem to have been no repercussions to me stopping it. If only i had known that before! I think the insurance company are very fickle…

On a more general note it is so reassuring to read his statement about CFS/ME. Despite having seen him several times before and attending regular group sessions with his team, i was never completely sure of how he felt about the illness and it’s causes etc, which affected my experience in those groups. The support they offer is obviously very limited by the NICE guidelines, and i found it of limited use (despite this, the specialist advises me to go again – deep joy), but it is good to know what he thinks. He genuinely seems to care about pwME and our cause and wants to help us. It must be very difficult for him not to be able to do more.

Well, i was supposed to have CBT on Monday. I was not well enough to go, so cancelled for the second time in a row. This time, however, i spoke to the psychologist who does it and he asked if i wanted to make another appointment. I said that i felt that the chances of me being well enough at any given time are quite slim and that even when i did feel able, such as the last time i went, i suffered a bad flareup of symptoms and felt very unwell for about a week afterwards, and that i did not think this was a reasonable thing to have to go through. I said that i thought it was better that i don’t hold up his waiting list and waste appointments as i did not feel this was the right time to try to attend CBT… not that i think there will be a better time 😉

He was very understanding. He said he had had contact from my insurance company (who had “suggested” i had CBT in the first place) who wanted a written report from him. I had already told him that i was uncomfortable with them and the information they have gathered about me, some of which i felt was not particularly relevant or accurate, so he told them he would have to show me anything he wrote before he sent it. Very nice of him. So after i said i did not think i would be coming back he offered to write a letter to the Insurance company on my behalf and said he will email it to me to check beforehand. I have not had it yet and i hope he does do that. He even asked me what i wanted it to say! I said that if he could back me up that i do not seem well enough to attend and also if he felt comfortable to say that he does not feel i am in dire need of CBT right now, i would be very grateful… he has only seen me for two hours in total and that was just asking me a lot of questions and setting the scene i felt, rather than actually doing CBT… so we will see what his letter says…

Also i did contact the DLS (Disability Law Service) and explained my situation to them, that i felt bullied into CBT and worried what they would “suggest” i undergo next, or that they would stop my payments… i don’t think i should say exactly what they said but they sent me a good email of suggestions of what to do if they do continue to make claiming difficult 🙂 Thanks DLS! I feel more empowered! Thanks also Rachel for sending me the link in response to a previous post on CBT.

I probably should have told him more specifics of how badly attending had affected me last time as it was like i had used up all my cognitive function in one go answering all his questions and spent the following couple of days lying in bed and my brain was in meltdown – random thoughts flew in and out – i couldn’t remember certain things and kept thinking i had forgotten things (i probably had!) and it was all a bit traumatic. Although maybe if i told him that he would think i needed more CBT… sigh! So for now i am released from it, or at least in the process of, i am just waiting for the phone to ring though… the insurance company have not rung me for ages and it has been so nice to be left alone as they were ringing me very often for a while there before the CBT started… i suppose i will have to start screening my calls again… sigh. I always ring them back but sometimes i just am not in the right frame of mind to deal with their stupid questions…

Well, I did promise to write about CBT, a contentious topic for us people with ME (pwme)…

This post has been really hard to write, partly because I am so drained of all energy from going to CBT on Monday (It is now Thursday and I have been writing this gradually since) and partly because it is hard to write coherently about something that I am finding is linked to a lot of stress, anger, frustration, powerlessness etc. I am hoping that writing this, although draining in itself, will be more therapeutic than CBT has been so far… ha ha.

It (Cognitive Behavioural Therapy) is hailed by some as the one treatment that research has shown to be effective (but did these people who got better really have ME? Would they have improved anyway?), it is recommended in the NICE guidelines for treatment of CFS/ME but there is also a lot of evidence that it is unhelpful, no better than a placebo, or may improve people’s mental wellbeing/coping abilities but they are still as physically ill as before… see www.theoneclickgroup.co.uk and search for CBT and you will see some recent research and debate…

It also seems to be seen as a primary treatment option for this condition, which angers pwme as much as it would anger anyone with a serious physical illness… It apparently costs the NHS about £100 per CBT session so many people think that maybe focussing all that cash on physical investigations/research may be more worthwhile. I am sure it is very effective for mental health issues and for helping some people deal with their illness, but a cure it is not.

So, I had my second session and it was ok. Not much else to say to describe it really… nothing much of any excitement happened! I don’t think we have got started properly yet as we just seem to be collecting facts…

In the first session we discussed (or rather I was bombarded with questions – normal counselling, it seems, this is not!) about the time I originally got ill up until the present (a period of over 9 years), and this time we discussed all times before I got ill. I did get a bit upset talking about the time immediately before I got ill, as things were going particularly well for me then, but apart from that the session was all run of the mill. As most pwme will attest, we have to narrate our lives and histories over and over again to every new health professional we come into contact with and it just seems like going over the same old ground… While my CBT guy seems “enlightened” and does not seem to think CBT will be a miracle cure (but may help me to cope with my life better) he does seem to also be trying to figure out the mystery of it as well, he can’t resist it. They never can…

Guess what Mr Psychologist? No one who came before you made any startling discoveries about what caused my illness, but have a good rummage about anyway, be my guest…

He asked me questions about my personality… I can’t remember the question but basically was I the sort to run myself into the ground by overachieving, not relaxing, being wound up etc… Well, sorry to say that although I was young and passionate about life, threw myself into whatever I did with enthusiasm, I don’t think to any extreme that would have made me this ill… I get the feeling that it would be very convenient if I was a classic Type A personality then we would have something to work on. Even if I was, living with ME for all these years has changed me and my personality forever.

He asked me about my home life growing up, and unfortunately, it seems, my childhood does not seem to be any more unhappy/traumatic than most people’s (was your mother at home when you were growing up? er, yes, and my dad worked from home too!). Yes, I have had my share of difficult times but who hasn’t? When I try to say that the time just prior to getting ill was actually one of the best I had had for years, I am viewed with scepticism… (am I delusional now? or is it just disappointment that they can’t find anything/anyone (me) to blame…)

At the end of the session he asked me to write a diary for a week and to put in what I do each day, and also mark each activity with scores of 1-10: my mood, how much “joy” I am getting out of doing it (as opposed to before I got ill, I think), how much energy I have when doing it and afterwards, any major symptoms, how much of a sense of achievement I have from doing it, etc etc. He then said that we can look at it and he will be “another head” to be used to look at these problems and see if we can improve anything. All well and good in theory, but even he does not seem very enthusiastic. But maybe the diary will at least give him an idea of the severity of my condition which he does not seem to have grasped yet… maybe I will give him a copy of the one I did a few weeks ago for my DLA application, or one I did when I was attending the hospital group as well, just for good measure.

I may seem very negative about this whole thing, and unwilling to help myself. I do have problems coping with my illness and am getting increasingly frequent bouts of depression and sometimes anxiety too. But these are linked to times when I have an increase in symptoms and illness severity and I am just unsure if I am willing to give so much energy to this as an attempt to improve these things or whether I would rather see a friend, go out somewhere, get a massage, read a good book, etc instead… If I am going to overdo it, I would rather blow my energy on something with a feel good factor about it! It seems to take so much energy to get someone to understand my illness and how it affects me as a starting point for them to be able to engage with me, with no promises of it being anything more than a pointless exercise. I am trying to be open minded and “trust the process” but it is causing me a lot of stress already.

Unfortunately over the years I have had such bad experiences with psychologist-types (from NHS, insurance company etc) that I really am coming into this with “baggage”… I need therapy to get over my traumas from previous “therapy”… oh dear! After the first CBT session I got quite worked up about things he had said and judgements I could see him making about me (not very ill, looks fine, possibly in a “benefits trap” – yes he used that phrase) and had a bit of an anxiety attack… I don’t really care about what he thinks about me but what his report will say could matter, see HPI below…

Another reason to feel negative is how completely draining it is. Monday after the session I had a lie down but it was nearly tea time and I did not want to sleep so late on as it would affect my sleep pattern that night. I felt so awful that evening, brain completely mal-functioning and a struggle to watch TV even on quietly. The next day I was spent most of the afternoon in bed as I said in my little post, and I still feel terrible now. There are so many things I would rather have used that energy for than for telling someone about my childhood… again.

And so why am I even going?Well I have to go as it has been recommended by my HPI provider (HPI is an insurance payment – my employer has an insurance policy which means they give a proportion of your wages if you are on long term sick). So if I don’t go, it may seem as if I am not trying to help myself and they may then stop giving me my benefits… it was made quite clear to me that I need to comply with their treatments, as they want to “help me” and enable me to get back to work. While it was made clear that I should comply, they have not told me what my rights are to refuse treatment etc and what processes exist for any debate on this.

They are all nicey nicey on the surface though and ring me up all-the-time to check on how I am feeling about work, which feels like harassment sometimes. (I try to say it doesn’t matter how I feel about work as I am not in a position to even consider going! They seem to think that if I thought positively enough I would give it a go, and then everything would be ok… and cannot conceive that I physically cannot get there or at least, not without serious, distressing symptoms which would make me unable to function).

Although it is not a fortune I am getting, as I was only able to work part-time, I am very pleased to be getting this extra cash and don’t want it to stop, but how much can I put up with to keep getting it? If I say I don’t want to continue with CBT, what is next? Another doctors/psych visit (please no, I can’t cope with that), GET? (they already asked me if I have heard of it…), or just stop paying me? At what point do I say I can’t cope with the stress of the insurance company, and hand my notice in at work which will stop the payments? Why should I have to do this when I am still too ill to work and therefore entitled to the money? What about all the people in the same boat who desperately need the cash and do not have the choice? Is this what life without the NHS would be like? I feel coerced into having CBT. No, it has not been a trauma as yet, but it seems like such a waste of my energy. It is also caught up in all the baggage that I have due to the insurance company and the two doctors that they have sent to visit me, who originally recommended i go to CBT, whose visits I found very traumatic… I may talk about that another day!

Well, this has turned into a RANT! I better leave it there. I had better save some energy for my diary duties… hmm maybe I will start it tomorrow… or the next day… or the day after…

Well “drum roll” this is the official opening of my blog! I know, i know i already wrote something on Friday but no-one read it yet and i just needed to know that i could work out the basics before the BIG DAY…

So it is (almost) International ME Awareness Day 2008! I have started this blog specifically for this occasion, as explained in my HELLO page.

I am going to talk about CBT soon (maybe tomorrow for a de-brief!) as that is what i am doing on Monday 12th May… having my second CBT session. This is not the way i would like to mark the occasion but as i can’t do more than one “big” thing on any given day (usually more like one thing in any given week), i shall have to wait til next year to join in any actual events that are being held to mark the day.

Surprisingly there actually is something going on near me – an Action for ME (AfME) pillow fight fundraising thing. I am a bit disillusioned about the whole concept, mind you, as even if i was well enough to get there and watch for a while (maybe of i took a taxi both ways – goodbye £25 – and wasn’t already having CBT), i think they really should do something people with ME (pwme) can take part in, not just their able bodied friends/family… being bashed with a pillow, however soft is not something many of us would risk with our dodgy muscles and various aches and pains… even the symbolism of a pillow fight annoys me… “lets make being bedridden sexy…” please NO. It also makes ME into just about being tired, and lying in bed, which oversimplifies an illness characterised by many diverse symptoms. Maybe i am being over-critical but it is not for me.

One thing i have heard of which anyone can do is a vigil… it may not be everyone’s cup of tea, but it is inclusive at least and creates awareness which is the general idea! See the website:www.vigilformeawareness.org.uk/ I will be taking part!

Right, better go fill in the forms for CBT about how i have been feeling this week… I just don’t feel like i fit into the ticky box categories… i feel some scribbling coming on 😉